We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Wednesday, January 18, 2012

It's Been A While...

After our trip to New York, we hopped right into the holidays. Between family functions, Josh's peak season at work, back-to back colds for the little man, and a baptism, we have neglected to provide any blog updates. I'm sure you can sympathize...

On the health front -- we met with Jacob's GI physician in late November and were able to talk with him about some of our concerns with his daily (mostly early AM) vomiting and minimal weight gain. His vomiting is caused by the pressure of his enlarged liver and spleen that squish the stomach, which sometimes causes him to throw up. He doesn't seem to bothered by it, but we need to keep an eye on it so he does not lose weight. If he begins to fall below the normal weight range for his age, we will need to consider a gastrostomy tube (G-tube) for feeding. Jacob's GI physician took the time to show us an actual G-tube and walk us through what the procedure and maintenance would require. He also ordered an upper GI test so that we could see if there were any blockages or abnormalities. We also have a swallow study scheduled for this coming Friday, which will help evaluate his abilities for swallowing food and establish a baseline for future comparison.

Post GI visit and upper GI test - minus the nasty barium that Jake had to drink for the test, we're happy to report that his upper GI revealed completely normal function. Good news! For now, we have replaced all formula bottles with Pediasure (a.k.a. "Jake's vanilla milkshakes"). It's pretty costly, but we are very lucky to have a friend who works for the company that manufactures Pediasure and she orders it for us for half the price. Thanks Tara! Jacob's vomiting has seemed to subside substantially over the past several weeks or so and at his 15-month appointment Jake had gained a full pound in a month! Great news!!

1st Haircut- Bye, bye baby mullet!! Josh was finally able to come to grips with the fact that mullets are NOT a good look on a one-year old (or anyone for that matter). Auntie Hope came to the rescue and gave our handsome little guy his very first haircut.

Jake checking out his new hairdo
 Cold(s) - Jacob managed to go almost a full year without a cold, but the winter season came with lots of germies. Jake caught a head cold right before Christmas and shortly after getting rid of it caught yet another head cold. The "boogy sucky" was close by so that we could ensure his cold didn't move into his chest. He had a difficult time eating with his stuffed-up nose and we all had a few sleepless nights, but all-in-all he fought the colds off pretty well.

Testing out his new ride

Christmas - we had an absolutely wonderful Christmas!! It was so much fun to see Jacob's excitement when opening presents. Jake's anxiety around strangers (anyone that is not momma or daddy) has gotten a lot better, so he was more at ease around people at our large family functions. His visit with Santa went over a lot better this year too! In fact, he was so good this year that Santa brought Jacob a super cool red trike for Christmas. He LOVES taking rides to the park and even quick spins around the house!

Baptism - last Sunday was a very special day for our family. We were finally able to get Jacob baptized. It was something that we have wanted to do since he was born, but with everything our family has endured over the past year it unfortunately fell to the wayside. With receiving Jacob's diagnosis of Niemann-Pick, our desire to have him baptized became even stronger and our church's deacon arranged to hold a special baptism just for Jacob. We feel so blessed to have Jacob in our lives and even though his time with us may not be as long as we would hope for, we want to do our best as parents to meet his spiritual needs as well.

Pre-baptism pose with Momma and Daddy

Jake's Godparents: Uncle Joe and Auntie Jenee